I feel incredibly hopeless.

Posted by morganjane @morganjane, Dec 17, 2023

I’ve lost 4 years of my life that I can never get back due to this “illness” that nobody can seem to figure out. Like many of you out there, I’ve encountered some of the coldest & most dismissive doctors out there. The lack of compassion from some of these physicians has truly bothered me. I’ve gotten the ole “barely do any actual research & slap the fibromyalgia diagnosis on it to get her out of my office” shtick more times than I’d like to admit. I’m exhausted. I can’t afford to go to a fancy medical center. I live in Arkansas & we have very few specialists & they all have pretty poor reviews. So I’ll put my symptoms out there in hopes someone runs across this one day & is like “oh hey, I know exactly what that is!”

I want to just preface that I’m in no way nor have I ever been a hypochondriac. I don’t sit & dwell on my health. The only reason I’m so concerned right now is because my health got too bad to ignore.
I’m 32 years old. Female. All of these symptoms began almost 4 years ago out of the blue. No known trigger, I was happy, healthy, very active & fit. It’s literally like I woke up one day & felt like crap & it never went away. Its left me bedridden most days. Had to quit working as an Esthetician & work from home. I’m truly MISERABLE.

SYMPTOMS:
-Debilitating Fatigue *Severe
-Brain Fog *Severe
-Memory loss
-Cognitive impairment *Severe
-Facial flushing *Severe
-Zero energy
-Feeling like I’m wearing a necklace that is too tight & can hear the blood rushing in my ears
-Body feels like it’s vibrating when I lay down sometimes
-Excessive sweating
-Exercise Intolerance
-Always hot *Any sort of physical exertion makes me feel like I’m going to overheat or pass out. ie. washing dishes, fixing my hair, showering, etc.
-Dry skin on entire body *Severe
-Dry eye syndrome *Severe
-Dry mouth
-Dry sinuses with super sticky snot
Basically my entire body is dry from the inside out.
-Keratosis Pilaris on lower legs caused by the dry skin
-Frequent canker sores
-High blood pressure
-High cholesterol
-Raynaud’s Syndrome *Toes & fingers. Mother also has this condition.
-Livedo reticularis on limbs when cold
-Rapid weight gain *About 20lbs in 1 year.
-Depression *This is a symptom, NOT the cause.
-Chronic pain in joints
-Frequent severe headaches on one side of the head, towards the front
-Fingers or feet swell & turn red/warm
-Ridged, brittle fingernails
-Red vertical line down big toenail
-Hair loss
-Frequent infections
-Gum Disease
-Rapid tooth decay
-Dark scarring
-Heart palpitations
-Insomnia *Severe
-Arthritis *Knees, hips, spine, ankles
-Urine Hesitancy
-Heat intolerance
-Either no period or it’s extremely light and only lasts about 1 day
-Depleted Estrogen & Progesterone *They were brought up with BC pills but no idea WHY they were depleted
-Constant crying
-Constipation *I have ibs-c but the c has gotten significantly worse.
-Tachycardia *This is constant. Mother also has this condition.
-Cravings for carbs & sweets constantly
-Nose runs with physical exertion
-Enlarged lymph nodes in armpits that get bigger & very sore around the time of my period even if I don’t actually have my period

All of the labs that have been done are because I requested them. All labs have come back normal aside from the high cholesterol & the high blood cortisol. The saliva & 24 hour urine cortisol tests were normal.
I have a thyroid nodule that they said just needs to be monitored annually.
Brain scan was normal.
I’ve had the normal blood work for thyroid & ANA which were normal.

I honestly feel like I probably have a fairly normal condition but I can’t get a doctor to give me enough time during the visit to actually get anywhere and I’m sick of being told it’s probably just fibromyalgia or in my head. ITS NOT.

H E L P 🏳️

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geebold | @geebold | Apr 30 9:53pm

Have you been tested for early menopause? It could be perimenopause. I feel like I had many of the symptoms you listed as I approached menopause.

I wish you well in your search for an answer(s).

dfb | @dfb | May 1 2:48pm

I am so sorry you are suffering.

Have you been tested for the Lupus antigen? Lupus is an autoimmune disease that can wreak havoc on the human body. It's a long shot, but you might as well have it ruled out. Doctors often miss it.

I have had treatment-resistant major depressive disorder my whole life. Recently, I titrated, with my doctor's approval, most of my meds. Shortly after eliminating the worst, Venlafaxine, I developed crushing anxiety. I had never experienced anything like this. The anxiety, combined with my persistent desire to end my life, was more than I could take.

When I asked my doctor for an anti-anxiety drug, Lorazepam, she said no. Three days later, I was in the emergency room; I was going to kill myself ( side note). I'll never go to the emergency room again with a mental health problem.

Now to the point of the story. After that, my doctors became incredibly responsive and continued to be there for me. Until my admission, I was pretty much triaged as "beyond hope, keep comfortable."

Sadly, it had to get that bad for my doctors to believe me.

The emergency room doctors must treat you for your presenting condition or conditions. They will order every test they have to try to figure it out, it's what they do. Try to go to a teaching hospital if you can. It will suck being in the hospital, but it might get things moving.

My mother-in-law had Lupus; that's how I know about the antigen. When she went to the hospital, she would have to yell at the doctors because they assigned everything to the Lupus. When she had pain in her chest, they said it was the Lupus. She had a heart attack. When she told them she had pain in her abdomen, they blamed the Lupus. She died of abdominal cancer three months later.

The country's healthcare system is broken. We must advocate for ourselves as we would for our children or other loved ones.

You might be able to help yourself by Googling all of your symptoms and seeing if there is a connection between them. In a short time, you will know more than your doctors.

I wish you peace and good health.

ravenh | @ravenh | May 2 1:32pm

I do not know if anyone else has commented as to what is wrong here but… I have a very very good idea. No matter when it was have you taken a Flouroquionolone antibiotic? I am talking even one? Such as Cipro Levoquin etc etc. if so you have most likely been floxed. Go on the groups on say Facebook and research how many people are dealing with this shit. You can also view many many videos on YouTube. Good luck but sounds like this is the culprit.

covidstinks2023 | @covidstinks2023 | May 3 7:06pm

Bless you sweet morganjane! God Bless You.

So many things come to my mind for you. I'll try and remember your symptoms.

1) Have you had a complete thyroid panel done? It's not just TSH, T3 & T4. A complete thyroid panel is usually only done by an Endocrinologist. Staying hot, fatigue, palpitations can be signs of thyroid disease. It can also make you ache.

2) Have you had a complete panel done with a Rheumatologist for autoimmune issues? I question if you have an autoimmune disorder. Lupus, RA, Mixed Connective Tissue Disease can all cause a lot of your symptoms.

3) I know some doctors do give a diagnosis of Fibromyalgia if they do not have answers. It is a real syndrome with a lot of the issues that you are describing. Thyroid Disease tends to go along with Fibromyalgia.

4) One sided headaches are usually migraines....I have had these for years. A primary physician can usually diagnose this. If you are not happy with your primary physician, ask friends who they go to and if they are happy with their doctor. Also, there are patient reviews usually you can see online about doctors. I wonder if your have low D3 & B12. This can cause some of your symptoms. Low D3 can cause dental issues, fatigue & joint pain. Low B12 can cause extreme fatigue.

5) Hormone Imbalance can be treated. Bloodwork can be done to see if your levels are off. Also, if you are feeling depressed, you can discuss this with your GYN.

6) Lyme Disease usually shows a negative in bloodwork if it is not drawn further out than 2 weeks of being bitten by a tick.

7) Do you have a lot of mercury fillings in your mouth? The jury is still out on that one, but, I would ask my dentist what he thinks.

8) Since this was 4 years ago, did you by chance have COVID? Long Covid can also cause a lot of symptoms that you are having.

It is frustrating to not get answers when you know something is wrong. I apologize on behalf of the doctors that did not listen.

Personally, start with your worst symptoms. If its headaches....a primary physician should be able to diagnose if its migraine or not. He may send you to a Neurologist if its migraine related.

It is going to be like unpeeling an onion with you I think...unpeel one layer at a time of your symptoms.

Praying for you right now. Keep me posted. I care.

red79 | @red79 | May 15 4:45pm

In reply to @morganjane "I want to thank everyone for your awesome words of encouragement & I’m sorry we have..." + (show)

@morganjane

I want to thank everyone for your awesome words of encouragement & I’m sorry we have all been brought here under such poor circumstances, but I’m glad there is a community to make us feel less alone.

Many asked about Lyme & I was tested for Lyme Disease which was negative.

Sadly, my PCP fired me as a patient a few weeks ago because she found out I asked for a second opinion. (This was because she had told me to try Mayo Clinic because she was out of ideas even though she put forth zero effort in even finding a diagnosis, but I digress)
Apparently both doctors are under the same network & she was alerted to it somehow. All I was told was that she is severing ties with me because there were “negative connotations” in the notes from the other doctor & because of that, she no longer feels she can be my doctor. I was blindsided by this but more so just really confused because I KNOW I did not say a single negative thing about her during my visit. I mean, I’m not a 16 year old for crying out loud.

You see, having tattoos & being involved in the tattoo world for so long, I heard a long time ago from an artist that you NEVER speak badly about an artist to another artist because it only makes YOU look untrustworthy and difficult to work with. Some artists will not even work with you if you have that sort of behavior, which I don’t blame them. They just don’t put up with putting other artists down.
Anyways, that little tidbit has always stuck with me & I’ve since applied it to every other professional out there, including physicians. I simply would NEVER talk badly about a physician to another physician. Period.

I was able to get ahold of the notes from the visit & it only confirmed my suspicions that she was making it up. I truly believe she was just ready to cut ties with me because I would always request new testing & asked questions.

So, now I’m without a PCP with a chronic illness. I’m heartbroken, I’m offended, & honestly my feelings are hurt & I don’t like my character being questioned. But….whats done is done and I’m sure it was time for a new PCP anyways so maybe it’s a blessing in disguise. I’m not giving up yet. If anything I’ll survive purely out of spite. Lol.

Thank you all so very much for your kindness. I’m truly in awe of the kindness I’ve seen in this little community of complete strangers on the internet.

-🖤Morgan

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hi Morgan Jane Id love to be your friend,😊 and stay in touch x

red79 | @red79 | May 16 2:03pm

In reply to @morganjane "Wow, thank you for all of your suggestions. I wasn’t expecting anyone to respond to be..." + (show)

@morganjane

Wow, thank you for all of your suggestions. I wasn’t expecting anyone to respond to be honest. To answer some of your questions, I did have 2 root canals I think within about a year of the onset. I do recall around that time I also had an abscessed tooth that I had to get surgically removed. Oh & I’ve got a metal filling that I’ve had for maybe 20 years or so. I do remember watching that documentary called “Root Cause” or something like that & I was shocked to say the least. Definitely something I need to read up on.

I was tested for Lyme which came back negative but I can’t remember the last time I was outside where I could have gotten bit, so I didn’t think it’d be that anyways.

Since I work from home now, I’m here 24/7 & to be honest I have no idea if there’s mold. I’m not quite sure how I’d go about checking in to that but it’s not a bad idea. I live in an apartment complex that was built maybe…10 years ago? Idk.

I’ve seen a rheumatologist & the guy was probably one of the most unprofessional doctors I’ve come across. I had been referred there by my PCP (by my request) & there’s no intake paperwork, I get in there & he has no file or anything on me, & he asks why I’m there & if I’ve had any bloodwork done….he couldn’t even bother to look at the referral with my paperwork & labs…I tried explaining it all to him & he literally doesn’t touch me or anything, just immediately asks “have you heard of Fibromyalgia?”….. I was so mad because he didn’t even attempt to dig a little deeper or order additional tests, he just said my labs sound fine & there’s nothing he can do for me. The labs I had done were just your basic complete panel that you get done yearly. So the rheumatologist was a bust & I won’t be going back to that dude again.

Since day one I’ve really felt it has to do with either my thyroid or some sort of autoimmune disease. My father has hypothyroidism. But when the labs are normal, a lot of doctors don’t want to order more specific tests for thyroid like TPO or whatever else there might be. Like….why not just do it to humor me? It’s not going to hurt them in any way.

I truly don’t feel like what I have is anything super rare, I think we just don’t have competent doctors here & I hate to say that but I’ve had repeated bad experiences. I get it, they probably see a LOT of patients who are actually hypochondriacs. I know that has to be incredibly annoying. But being dismissive to each person who presents with a condition that isn’t your run of the mill common ailment, can be detrimental to one patient like myself with a legit health concern.

It’s just frustrating & it can be daunting trying to find help when you’re so limited on funds & living in a state with no resources. I’d LOVE to go to Mayo or Vanderbilt or UDN but it’s just not feasible. To add to my pity party, it doesn’t help that I live alone, I’m single with no kids, no family that I speak to, & no close friends anymore.

I just wish I had access to more caring doctors. It breaks my heart that the people we go to when we are at our worst, who we depend on to have our best interest at heart & to hopefully help us get better, have been the people with the least amount of compassion. I know there are still good caring doctors & nurses out there, they’re just more of a rarity now.

That’s the end of my little rant. Thank you again so much for all of your help. You’ve given me more avenues to explore which is great. 🖤

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I'm also in same boat my family don't seem to understand either 😞X stay strong

red79 | @red79 | May 29 9:09am

In reply to @red79 "I'm also in same boat my family don't seem to understand either 😞X stay strong" + (show)

Hi Morgan Jane how are you,well I also have tattoos as I think there cool,Id love to keep on messaging you if thats ok with you,?xx

cekkk | @cekkk | May 29 11:29am

In reply to @timt347 "To @morganjane, see the HRSA community health centers as a possible source of care (https://bphc.hrsa.gov/about-health-centers). To..." + (show)

@timt347

To @morganjane, see the HRSA community health centers as a possible source of care (https://bphc.hrsa.gov/about-health-centers).

To @cekkk, I do not think that it is an accurate statement that government has a goal to destroy medicine. I am fairly old myself (mid-60s) and that is not what I have seen. For an even longer historical perspective I can recommend a book called "The Book of Charlie: Wisdom from the Remarkable American Life of a 109-Year-Old-Man," by David Von Drehle. He was a doctor in the 1920s and beyond. (Your public library may have it.) Among other things, he saw how medicine had changed since then.

It is also helpful to have a global perspective to see how other countries handle medical care. The British, for example, have the National Health Service.

I can assure you that no one in the civil service gets up in the morning and thinks about anything other than how to do a good job for the American people. What the political appointees are thinking, I can't say.

I am a civil servant myself. My specialty is IT (computers). There is a lot of IT in government, and my job is basically to do oversight of IT contractors to make sure that they do what they are supposed to do, and to make sure that the American people get good value for their tax money.

That value includes benefits for recipients of Medicare, Medicaid, and Social Security. It also includes the health research done by the National Institutes of Health, a couple of dozen NCI-funded Cancer Centers that do both research and treatment, and the HRSA community health centers.

I have AML, and I recently had a relapse. I am getting chemotherapy for it. I am working part-time because that is all I have the energy for right now. I considered retiring because, quite frankly, my expected lifespan is so short that having enough money to live for the rest of my life may not be a problem. I talked about this with a coworker because I was looking for meaning in my remaining life . She said "Tim, what do we do here? It's healthcare." That reminded me that although I don't see patients, my IT work does contribute to getting people healthcare. My work provides meaning to my life now, and that is why I continue it.

My coworkers and I are serious about our jobs. It's intense. For example, I have a conference call set up with people next Friday (the Friday before New Year's) in which we will be talking about some particulars of an IT contract coming up. The contract is about software testing of an IT system. The system is needed to provide health care to millions of people.

To add to my already considerable experience in the IT field, and to prepare myself to deal with the software testing contractors, in the past few weeks I marshalled my energy and read about 150 pages of difficult, technical papers about testing a large-scale System of Systems. What is possible? How do you do it? What is the best methodology to use? Now I'll be able to judge which testing contractor can do the job and provide the best value for the American people.

Here I am with a very bad cancer, receiving treatment, and I'm putting my energy into keeping IT systems running so that a major part of the American healthcare system can continue to function. That's the kind of intensity and devotion that I see among my coworkers every day. If I died tomorrow, they would continue, but I very much want to do my part, and so do they.

If you want to better understand the American healthcare system I can recommend a source that my boss three levels above me recommended, which is the research reports by the Kaiser Family Foundation. If you want to know what efforts are underway to improve the American healthcare system, you can take a look at the new models produced by the CMS/CMMI innovation center.

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I pray for remission. With my small health problems at 81, I see truly sick people in waiting rooms at my various medical appointments. I'm very lucky. Also spent 27 years working in the House and Senate as a contractor. NIH, usually the former NINCDS. I'm not totally unfamiliar with the federal government. Just one quick comment. Overly simplified, admittedly. But one thing that disturbs me, and I hope I'm wrong, looks as though the ACA did away wit catastrophic insurance and then instituted it's own form of same. And finally, with apologies, Drs. Fauci and Morens.

colely | @colely | May 30 8:28am

Hi. I agree with @ covidstinks2023. Check for infectious diseases. EBV and CMV, as well as Lyme, etc. Endocrine diseases. Allergies and sensitivities. Vitamin deficiencies. I had many of your symptoms, in the 1980s. The ignorant doctors looked for one cause when it was several, that came about for different reasons, over the course of 3 months. I had EBV, F ormaldehyde exposure, pesticide exposure, low Vitamin D3, Strep throat infection, low thyroid hormones, B and T lymphocyte depression. High Eosiniphil count showing chronic infection. And yes, you need complete hormone panel, as well. Please don't give up!

wendyhobbie | @wendyhobbie | Jun 9 10:53am

Fibromyalgia can cause a lot of our symptoms. Osteoarthritis complicates these symptoms. Turmeric, 500 milligrams of magnesium has helped me though my conditions have worsened with age. PMS and FIBROMYALGIA have been researched a lot since I was diagnosed. I have developed nerve damage and osteopenia now…diet, exercise, enough sleep and relaxation are vital! Take of yourself and your precious life!